Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Uveitis symptoms

Yeah!! Glad you are going in. I echo everyone else. Do not mess around where your eyes are concerned. I have scarring from ongoing uveitis. I see my Optho who is a retina specialist no further apart than 3 months and this past year monthly.

Let us know what you find out. We only get one set of eyes!
Hugs and Blessings.
Possi

Probably too late now, but if anyone ever gets this kind of pain and goes off to an emergency optho appointment, make sure you assertively tell them you have autoimmune disease problems, so they take it seriously and as urgently as it needs to be, and get you in as an urgent case, even if you think you could hold out a bit longer.

Hi,

I hope your appointment went ok.

Just my two penneth on the reaction to light. I have had many iritis attacks mostly in my left eye and I experienced all the symptoms already described to varying degrees. I did find that the photophobia was not so bad with subsequent attacks. Maybe it was because I became good at spotting the signs and I would don dark glasses which helped immensely and treat it quickly. For me after my first two attacks it was the pain around my eye socket especially above my eye and left side of my head (sore) that were my warning signs and if it got that far haloes around light.

Whewww, glad you got in sooner. A few of us on here have that rascal. Hurts, hurts and hurts! Feels like arthritic bone in the eye socket and you can feel that it is moving slower. I had problems even with the light of our television and my husband had to have it dimmed. I hope your Dr. is one that is knowledgeable in it. I had to up my dose of Remicade to keep it at bay along with a maintenance dose of steroid drops. I have a specific protocol to follow. Hit it hard and fast. You will eventually know when it comes on and you start your treatment before you even pick up the phone to make your eye appt. I have dealt with this for years and boy, I'm sorry you are experiencing it too.

[spoiler][/spoiler]Don, John, Kat and Sue, Pea, Possi, Cemc, Grumpyalley,

Thank you! I saw my ophthalmologist today. He RX'd pred forte every hour for 8 hrs. Then a steroid taper on the eye drop and maintain oral prednisone. Drops were started ASAP, put ice+eye patch on and slept 4 hrs with pain control meds. I feel much more well. Thank you for caring and helping me push my date up to today! I couldn't have been a functional mother today and employee tomo with out your wonderful out pouring of sincere advice. Much love to you all! You've started to pull me out of the downward spiral!

<3 JennyMay

I am so thankful. I have been thinking of you and wondering how you are. I am glad you went in and got started with the treatment. It could have been so bad if you had waited.

Big Smile at your coming out of the downward spiral. May you fly up!

Hugs.
Possi

Thanks for letting us know how you are doing and glad to hear you are feeling better.

Great news and that is a great protocol. Hit it hard and hit it fast. Now you will know in the future if the rascal starts up, start your prednisone drops and call the Doc. I would start using any of the preservative free eye wetting drops as well as the steroid drops can become quite drying which can lead to permanent dry eye.

Hey, DON!

Great to see You back--still working Your magic? I no longer live in Anza, but moved to San Diego...however, now at home in Philippines until at least July. Looking at Reno to escape CA draconian confiscatory taxes!

Recently looked over photos we took with balloon hats at Gladstone's--long time ago! How have You been?

HEALTH,
John

Hi Jenny May,

I'm very glad to hear you saw the doctor right away and are now treating the uveitis. I would like to clarify one thing, however. I your post, it sounds like he only had you use the drops every hour for the first 8 hours, the was going to taper you down from that right away--is that true? If so, I'm concerned that your doc is not really using the pred forte drops the way they should be used. In 30 years of AS and uveitis, I've been treated by three opthos, and all of them used the same plan: bit it with the drops every hour for at least 5 days, and sometimes as many as 7. The taper after that would then be using the drops every 2 hours, then every 4, then every 8, and then I could stop. (Each step in the taper lasted the same number of days as the original every hour step). If the uveitis was particularly severe, the taper would include extra levels--there are times when I would be on the drops for up to two months.

Thus, if your doc only has you on the drops for a total of a week or less, I feel that really isn't long enough, even with you taking oral prednisone. Your options are to ask your doctor if maybe you should use the drops longer (based on your own research, you can tell him), get a second opinion, or go ahead and follow his treatment, but monitor that eye VERY closely after you stop the drops and restart the drops IMMEDIATELY if you to no the uveitis is still present (follow up with your doctor right away, of course).

Hopefully I am just reading too much into his treatment plan and he is not tapering you off the drops too quickly , but in case I'm right, I thought you should know this. As others have said, uveitis is VERY serious--it is one of the top five causes of blindness--and very fast acting, so hitting it hard and fast with the drops is essential. (In fact, if your bottle of pred forte isn't empty after you finish your treatment, be sure to keep it. That way, if the uveitis flares again, you can go ahead and start the drops right away while you are waiting to get in to that first doctor appointment.)

Good luck, and please keep us posted on how your uveitis is healing.

Brad

Sorry for the typos, this was done with my phone's virtual keyboard and I didn't feel like trying to fix all of them! :-) )